Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany


Making routine clinical-care-data available for medical research requires adequate consent to legitimize use and exchange. While, public interest in supporting medical research is increasing, individuals often find it difficult to actively enable researchers to access their data. In addition to broad consent, the idea of (consent-free) data donation has been brought into play as another way to legitimize secondary research use of medial data. However, flanking the implementation of broad consent policies or data donation, the attitude of patients, and the general public toward different aspects of these approaches needs to be assessed. We conducted two empirical studies to this end among Dutch patients (n = 7430) and representative German citizens (n = 1006). Wide acceptance of broad consent was observed among Dutch patients (92.3%), corroborating previous findings among German patients (93.0%). Moreover, 28.8% of the Dutch patients generally approved secondary data-use for non-academic research, 42.3% would make their decision dependent upon the type of institution in question. In the German survey addressing the general population, 78.8% approved data donation without explicit consent as an alternative model of legitimization, the majority of those who approved (96.7%) would allow donated data to be used by universities and public research institutions. This willingness to support contrasted sharply with the fact that only 16.6% would allow access to the data by industry. Our findings thus not only add empirical evidence to the debate about broad consent and data donation, but also suggest that widespread public discussion and education about the role of industry in medical research is necessary in that context.

Access options

Rent or Buy article

Get time limited or full article access on ReadCube.


All prices are NET prices.

Fig. 1: Attitude of Dutch patients toward secondary use of medical data for purposes other than academic research (n = 7430).
Fig. 2: Attitude in the German population toward data donation from digital health records.
Fig. 3: Possible beneficiaries of data donation for medical research.


  1. 1.

    Medizininformatik initiative (2020).

  2. 2.

    Semler SC, Wissing F, Heyder R. German medical informatics initiative. Methods Inf Med. 2018;57:e50–56.

    Article  Google Scholar 

  3. 3.

    Registratie aan de bron. Registratie aan de bron: Zorginformatie delen en optimaliseren. 2020. Accessed 23 Apr 2020.

  4. 4.

    Ministry of Health, Welfare and Sports. Data voor Gezondheid. 2020. Accessed 23 Apr 2020.

  5. 5.

    Minister of Medical Care dhr. B.J. Bruins. Data laten werken voor gezondheid: Een kwestie van gewaarborgd vertrouwen. Appendix to a Letter to the Chair of the House of Representatives. The Hague, 15 November 2018. Accessed 23 Apr 2020.

  6. 6.

    The nationwide network and registry of histo- and cytopathology in the Netherlands (PALGA Foundation). PALGA. Accessed 29 Jun 2020.

  7. 7.

    BBMRI. Accessed 29 Jun 2020.

  8. 8.

    WMA. Declaration of Helsinki – Ethical principles for medical research involving human subjects. 2013. Accessed 22 Apr 2020.

  9. 9.

    Council for International Organizations of Medical Sciences (CIOMS), in collaboration with World Health Organization. International Ethical Guidelines for Health-Related Research Involving Humans. Geneva, Switzerland: CIOMS, 2016, guidelines 11 and 12. Accessed 10 Mar 2020.

  10. 10.

    Ploug T, Holm S. The ‘Expiry Problem’ of broad consent for biobank research—and why a meta consent model solves it. J Med Ethics. 2020.

  11. 11.

    Richter G, Buyx A. Breite Einwilligung (broad consent) zur Biobank-Forschung – die ethische Debatte. Ethik Med. 2016;28:311–25.

    Article  Google Scholar 

  12. 12.

    Prainsack B, Buyx A. Solidarity in biomedicine and beyond. Cambridge, UK: Cambridge University Press; 2017.

    Google Scholar 

  13. 13.

    Rothstein MA, Knoppers BM. Part II: Harmonizing privacy laws to enable international biobank research. J Law Med Ethics. 2016;44:7–172.

    Article  Google Scholar 

  14. 14.

    Wilkinson MD, Dumontier M, Aalbersberg IJ, Appleton G, Axton M, Baak A, et al. The FAIR guiding principles for scientific data management and stewardship [published correction appears in Sci Data. 2019;:6]. Sci Data. 2016;3:160018.

    Article  Google Scholar 

  15. 15.

    Taichman DB, Backus J, Baethge C, Bauchner H, de Leeuw PW, Drazen JM, et al. Sharing clinical trial data: a proposal from the International Committee of Medical Journal Editors. PLoS Med. 2016;13:e1001950.

    Article  Google Scholar 

  16. 16.

    Nuffield Council on Bioethics. The collection, linking and use of data in biomedical research and health care: ethical issues, London 2015. Accessed 05 Mar 2020.

  17. 17.

    Richter G, Krawczak M, Lieb W, Wolff L, Buyx A. Broad consent for health care-embedded biobanking: understanding and reasons to donate in a large patient sample. Genet Med. 2018;20:76–82.

    Article  Google Scholar 

  18. 18.

    Richter G, Borzikowsky C, Lieb W, Schreiber S, Krawczak M, Buyx A. Patient views on research use of clinical data without consent: legal, but also acceptable? Eur J Hum Genet. 2019;27:841–7.

    Article  Google Scholar 

  19. 19.

    Krutzinna J, Floridi L. Ethical medical data donation: a pressing issue. In: Krutzinna J, Floridi L (eds) The ethics of medical data donation. Philosophical Studies Series, 2019, vol 137. Springer, Cham, 1:7.

  20. 20.

    German Ethics Council. Big Data and Health—Data Sovereignty as Informational Freedom. November 2017.

  21. 21.

    Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation),

  22. 22.

    Krutzinna J, Taddeo M, Floridi L. Enabling posthumous medical data donation: an appeal for the ethical utilisation of personal health data. Sci Eng Ethics. 2019;25:1357–87.

    Article  Google Scholar 

  23. 23.

    Prainsack B, Data Donation: how to resist the iLeviathan. In: Krutzinna J, Floridi L, editors. The ethics of medical data donation. Philosophical Studies Series. Cham: Springer, Cham; 2019. vol 137. 12:22.

  24. 24.

    Antoni van Leeuwenhoek. Netherlands Cancer Institute (NKI). Toestemming wetenschappelijk onderzoek. 2020. Accessed 23 Apr 2020.

  25. 25.

    IBM [IBM SPSS Statistics]. Release for Windows, Armonk, NY: IBM.

  26. 26.

    Boer D. Short Schwartz’s Value Survey in German (SSVS-G). 2013. Accessed 10 Sep 2018.

  27. 27.

    Yeganeh H, Su Z, Sauers D. The applicability of widely‐employed frameworks in cross‐cultural management research. J Acad Res Econ. 2009;1:13–32.

    Google Scholar 

  28. 28.

    Spini D. Measurement equivalence of 10 value types from the Schwartz value survey across 21 countries. J Cross Psychol. 2003;34:3–23.

    Article  Google Scholar 

  29. 29.

    Boer D. SSVS-G. Short Schwartz’s Value Survey-German. In: Kemper C, Zenger M, Brähler E, editors. Psychologische und sozialwissenschaftliche Kurzskalen. Berlin, Germany: Medizinisch Wissenschaftliche Verlagsgesellschaft; 2014. p. 299–302.

  30. 30.

    Patientenfederatie Nederland, Delen van uw data, Accessed 08 Jan 2020.

  31. 31.

    Howe N, Giles E, Newbury-Birch D, McColl E. Systematic review of participants’ attitudes towards data sharing: a thematic synthesis. J Health Serv Res Policy. 2018;23:123–33.

    Article  Google Scholar 

  32. 32.

    Kalkman S, van Delden J, Banerjee A, Tyl B, Mostert M, van Thiel G. Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence. J Med Ethics. 2019.

  33. 33.

    Xafis VG, Schaefer O, Labude MK, Brassington I, Ballantyne A, Lim HY, et al. An ethics framework for big data in health and research. Asian Bioeth Rev. 2019;11:227–54.

    Article  Google Scholar 

  34. 34.

    Boulos D, Morand E, Foo M, Trivedi JD, Lai R, Huntersmith R, et al. Acceptability of opt-out consent in a hospital patient population. Int Med J. 2018;48:84–87.

    Article  Google Scholar 

  35. 35.

    Langhof H, Kahrass H, Sievers S, Strech D. Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study. Eur J Hum Genet. 2017;25:293–300.

    CAS  Article  Google Scholar 

  36. 36.

    Meszaros J, C Ho C. Building trust and transparency? Challenges of the opt-out system and the secondary use of health data in England. Med Law Int. 2019;19:159–81.

    Article  Google Scholar 

  37. 37.

    Carter P, Laurie GT, Dixon-Woods M. The social licence for research: why ran into trouble. J Med Ethics. 2015;41:404–9.

    Article  Google Scholar 

Download references


The authors gratefully acknowledge the invaluable support by all academic and non-academic staff of the CCIM, University Hospital Schleswig-Holstein Campus Kiel, and of the Patiëntenfederatie Nederland. Special thanks are due to all survey participants.


TMF e.V. is funded by the German Federal Ministry of Education and Research (funding reference number 01ZZ1805).

Author information



Corresponding author

Correspondence to Gesine Richter.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary information

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Richter, G., Borzikowsky, C., Lesch, W. et al. Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany. Eur J Hum Genet (2020).

Download citation